Background: Support staff often face challenges with respect to experiencing meaningful moments of interaction with people with profound intellectual disabilities. Explicating such situational experiences of meaningfulness by staff members could facilitate the experience of meaningfulness for all staff.
Method: In this multiple case study, three staff members indicated specific moments of interaction as meaningful when viewing a recording of themselves interacting with a person with profound intellectual disabilities. Subsequently, they were asked to explain why they experienced each specific moment as meaningful. Their answers were thematically analysed.
Results: Two overarching clusters were identified as being related to meaningfulness: (1) experiencing meaning in certain actions, and (2) experiencing meaning in being together.
Conclusion: In interactions, support staff need to be aware of the tiny signals of people with profound intellectual disabilities and give meaning to them, and subsequently link "what happens" to their own professional aims and values to experience meaningfulness.
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http://dx.doi.org/10.3109/13668250.2024.2447998 | DOI Listing |
Front Psychiatry
February 2025
Seaver Autism Center for Research and Treatment, Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, United States.
Background: FOXP1 syndrome is a genetic neurodevelopmental disorder associated with complex clinical presentations including global developmental delay, mild to profound intellectual disability, speech and language impairment, autism traits, attention-deficit/hyperactivity disorder (ADHD), and a range of behavioral challenges. To date, much of the literature focuses on childhood symptoms and little is known about the FOXP1 syndrome phenotype in adolescence or adulthood.
Methods: A series of caregiver interviews and standardized questionnaires assessed psychiatric and behavioral features of 20 adolescents and adults with FOXP1 syndrome.
J Appl Res Intellect Disabil
March 2025
Special Education and Parenting, KU Leuven, Leuven, Belgium.
Background: Parents' decisions to use out-of-home support for children with intellectual disabilities significantly impact all family members, including siblings. However, siblings' perspectives on this transition to group homes remain underexplored. This study examines siblings' emotional experiences and changes in their personal and family lives due to their brother or sister's move to a group home.
View Article and Find Full Text PDFPediatr Int
January 2025
Institution for Children with Profound Multiple Disabilities, Kanagawa Children's Medical Center, Yokohama, Japan.
Clin Genet
February 2025
Greenwood Genetic Center, Greenwood, South Carolina, USA.
SPTAN1 mutations have been reported in association with autosomal dominant early infantile epileptic encephalopathy 5. Individuals present with early-onset seizures and profound intellectual disability. Recent reports suggest a wider spectrum with later-onset seizures and milder developmental delay.
View Article and Find Full Text PDFJ Intellect Dev Disabil
March 2025
Department of Ethics, Law & Humanities, Amsterdam UMC, Amsterdam, The Netherlands.
Background: Patients with profound intellectual and multiple disabilities (PIMD) cannot clearly express themselves. Therefore, tacit knowledge (TK) is crucial in caring for individuals with PIMD, while it possibly also plays a significant role in medical consultations.
Method: A qualitative inductive, thematic analysis was performed of 14 audio-taped consultations with intellectual disability physicians for patients with PIMD to explore how TK is represented and considered between parents and physicians.
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